Large study aims to predict brain bleeds in rare HHT disease

NCT ID NCT01158807

First seen Apr 29, 2026 · Last updated May 11, 2026 · Updated 3 times

Summary

This study looked at over 2,200 people with hereditary hemorrhagic telangiectasia (HHT), a rare condition that causes abnormal blood vessels. The goal was to find out what makes some people with HHT more likely to have a brain bleed. Researchers collected health information, blood samples, and genetic data to better understand these risks and improve future care.

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This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Contacts and locations

Locations

  • Barrow Neurological Institute

    Phoenix, Arizona, 85013, United States

  • Cincinnati Children's Hospital Medical Center

    Cincinnati, Ohio, 45229, United States

  • David Geffen School of Medicine at University of California, Los Angeles

    Los Angeles, California, 90095, United States

  • Georgia Regents University

    Augusta, Georgia, 30912-3135, United States

  • HHT Foundation International, Inc.

    Monkton, Maryland, 21111, United States

  • Hospital for Sick Children

    Toronto, Ontario, M5G 1X8, Canada

  • Johns Hopkins University School of Medicine

    Baltimore, Maryland, 21287, United States

  • Mayo Clinic

    Rochester, Minnesota, 55905, United States

  • St. Antonius Hospital

    Nieuwegein, 3435, Netherlands

  • St. Michael's Hospital

    Toronto, Ontario, M5B 1W8, Canada

  • St. Paul's Hospital, University of British Columbia

    Vancouver, British Columbia, V6Z 1Y6, Canada

  • UCHealth Pulmonary Vascular Disease Clinic - Anschutz Medical

    Aurora, Colorado, 80045, United States

  • University of Alberta

    Edmonton, Alberta, T6G 2B7, Canada

  • University of Arkansas for Medical Sciences

    Little Rock, Arkansas, 72205, United States

  • University of California, San Francisco

    San Francisco, California, 94110, United States

  • University of North Carolina at Chapel Hill

    Chapel Hill, NC, North Carolina, 27599, United States

  • University of Utah

    Salt Lake City, Utah, 84132, United States

  • Washington University School of Medicine

    St Louis, Missouri, 63110, United States

  • Yale University

    New Haven, Connecticut, 06520-8042, United States

Conditions

Explore the condition pages connected to this study.